Get Organized: Tips from Parents
by Susan Boswell, CAE and Elizabeth Reed-Martinez
Many different professionals are involved in the medical care and education of a young child with hearing loss who is learning to listen and talk. But at the center of a child's care are parents who play a critical role in communicating with various providers to guide their child's care and education. Building an organized reference helps to track your child's progress beginning the day of their diagnosis.
To help organize for success, AG Bell distributed a survey to parents of children who are deaf and hard of hearing asking them what they needed to know immediately following diagnosis, during the child's early years and about organization of medical and educational records as well as other topics. The survey generated a 68 percent response rate from parents who offered a wealth of advice and information about the top strategies other parents of young children with hearing loss should know.
A Sound Start
Survey respondents emphasized the importance of early intervention for children newly identified with hearing loss. "Make sure your child receives appropriate hearing devices and gets started right away with speech therapy with a clinician that understands the needs of a child with hearing loss,"said Maria Maggiulli of Emerson, N.J.
Parents also said it was important to reach out and connect with other parents of children with hearing loss in their local community or through e-mail discussion groups. "Talk to other parents, visit them and meet their child,and read their blogs," said Tammy Kenny in Galenda, Ohio."Connecting to other parents helped us realize the possibilities ahead for our son and that things were going to be okay."
Parents also felt it was important to connect with professionals in their community who are knowledgeable about hearing loss and to become an advocate for their child. "You can never obtain too much information or do too much research," said Christi Pritzker of Hewlett, N.Y. "Ask questions about what you have read if you don't understand it."
Kathy Doyle in New Jersey began her journey parenting a child with hearing loss with a notebook. "I networked like crazy, seeking out resources and assistance so that we could make decisions as we developed a strategy for moving forward. That worn notebook is still in my desk drawer because it reminds me of the unsurpassed empathy and kindness people showed us in those early days."
For Doyle, a single notebook was the beginning of an organizational system for information related to her daughter's hearing loss and for communicating with professionals along the road. Nearly all of the parents surveyed said that they organize information about their child's hearing loss.
When asked which medical and educational records were important to organize, most parents said they organized information about their child's hearing test results and their child's medical history, including current medications and diagnostic and treatment histories. Other records that most parents have on hand include contact information for doctors, hospitals, insurance companies and other medical care providers; the child's Individualized Family Service Plan (IFSP) or Individualized Education Plan (IEP); and a copy of the child's treatment plan and summary.
A smaller percentage of parents said they kept information for trouble-shooting their child's hearing aid or cochlear implant systems (45 percent); appointment notes from visits with doctors (42 percent); information about the child's type of hearing loss (42 percent); information about the insurance policy for the hearing aid or cochlear implant (31 percent); and financial and insurance information about treatment costs (29 percent). Almost half of well-organized parents (44 percent) said they kept track of all of this information.
Many parents develop creative organizational systems for all of the information related to their child's hearing loss. A three-ring binder with tabbed sections was the top recommended organizational tool. Parents suggested getting one - or more - large binder(s) for organizing information. Folders or notebooks were also used to hold information while other parents dedicated a drawer in a filing cabinet for information. Parents also scanned documents, such as an audiogram, and organized information into electronic folders.
Many parents developed a separate file with the most recent information about their child to share with others, moving older information into a binder or file cabinet. "In the beginning, bring the whole binder to every meeting, medical appointment or school visit. After a while, grab most current results/relevant information/plans - you won't need everything all the time," one parent said.
Some parents used a chronological organizational scheme, organizing information by date or by year. Other parents had one or more binders with sections categorized by subject, such as general health information; hearing loss tests/information; IEP and test results/educational information; and research articles, educational law, and miscellaneous. Other parents organized their information according to the provider, teacher or agency that served their child, or files were organized by the child's age. Respondents suggested placing a business cardholder in the binder to collect contact information, including a pouch to gather receipts related to medical care, and keeping a mileage log of trips to doctor appointments for tax purposes.
Many parents felt it was important to separate medical information from educational information. "It is absolutely necessary for parents to keep records from the school, not only educational records but also every single piece of communication exchanged between parents and the school," one parent commented. "This can be a lifesaver if there are problems."
Beyond important documents, many survey respondents developed a laminated fact sheet summarizing information about their child's disability for educational and medical professionals. Parents also tracked information about their child's expressive or receptive language development, and some parents kept a journal or blog about their child's progress. Rachel Harold of Pleasanton, Calif., whose son is now a college graduate, cherishes an audiotape of her son's speech before he was diagnosed at age 9 months as a reminder of the progress that he's made.
A key component not to be missed, parents noted, is a photo of the child. "This is about a child, not an ear!" said Terri Charles, in Natick, Mass., who suggested including a description of the real-world meaning of the child's aided and unaided hearing abilities by stating examples of sounds that the child can and can't hear. Other parents suggested including information about your child as a person, not just as a child with hearing loss, including the child's likes and dislikes and strengths and weaknesses. "It helps to remind me what I'm doing all the work for, and it's good to share with professionals to remind them that they are dealing with a little person," said Kelly Scriven of St. Peters, Mo.
Of the respondents, 97 percent said they were the parent or family member of a child or children with hearing loss. Most parents (66 percent) were 30-46 years old and had young children who were not in school (13 percent), preschool (20 percent), kindergarten (6 percent) or elementary school (26 percent). Approximately 24 percent of the parents surveyed said they benefited from early hearing screening and detection, and that their child received a hearing screening after birth and was identified with hearing loss before they were 6 months old or within the first year of life.
The parents surveyed said that the most important thing is to believe in themselves and their children. "Connect with other parents who have been through a similar experience," said Leah Lefler of Jamestown, N.Y. "Learn about all the options-and have hope!"
Sample Organizational System
The following is a sample of one parent's organizational system for records related to her child:
- Medical information from ENTs/specialists
- Medical information from audiologists
- Medical information from primary care physicians
- File for research articles specific to my child's hearing loss
- File for research articles on any hearing loss
- Studies on the physiology of the hearing loss
- Studies on the effects of the hearing loss
- Studies on the intervention needed for that hearing loss
- Insurance information
- Articles on legislation/regulations related to hearing loss
- Education law related to hearing loss
- Child's educational file
- All communication from the school, which are kept separately and filed by date
- The basics of ear hearing and types of loss
- Child's hearing devices
- Helpful websites,such as AG Bell
- Troubleshooting information related to my child's devices
Source: Volta Voices, May/June 2011